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I finally have a diagnosis

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  • November 13, 2015 at 5:41 pm #104506
    I finally have a diagnosis

    After many years of searching, I now have it officially, in writing, I have

    Myofibrillar Myopathy.

    This is a genetic condition that causes muscle waste and respiratory/heart problems. But that’s about all I know, what it is and what has caused it.

    Anyone else here been diagnosed with MFM or have any experience of what happens next?

    As much as iv googled it, read all the scientific bits, I feel im not being informed about what to expect. What happens next? If anyone can share their own personal experiences, id be so grateful.

    Thanks

    Morvenna.

    7rainbows
    Participant
    Posts: 23
    Joined: 15/02/2015
    November 14, 2015 at 2:26 pm #105980
    Reply To: I finally have a diagnosis

    I just checked the web site and the condition details for MFM are currently being put together, but hopefully there will be something soon.

    I don’t hunk there are one or two occasional visitors who have MFM who will hopefully come along and comment. Or you could contact HQ about a peer-to-peer contact.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
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